So, yesterday saw a complete spoon failure from Suey.
What with the pox, a hubby with a bad back, my Dad bedridden with a nasty infection and my Mum playing ambulance bingo for heart problems, my body decided enough was enough. I had no choice but to lay on the sofa and order a pizza for my boy's lunch.
I woke up this morning bleary from much needed sleep to answer the phone to BBC Radio London and the Vanessa Feltz Show. "Would I be on as an "expert" discussing the morning's headlines about "Benefit Scroungers?" Waking up a little more quickly than was good for me, I jokingly asked which particular kicking we were getting this morning? Either way I suggested she must have a copy of the Mail or the Express in front of her.
She spluttered with laughter and as I got the stories up on my laptop, she talked through them with me. Yet again, a list of "fake" conditions such as diarrhoea, drug and alcohol addiction, "blisters" "headaches" "stress" and even "nail conditions" were listed (funnily enough, not a peep about cancer, parkinson's, schizophrenia, bowel disease, heart failure, MS.....)
There is a little known spoonie phenomena called "adrenaline flood." When your body just can't take any more but you need to get on, fight or flight responses, formed over millennia, flood your body with adrenaline to take the place of the energy that "normal" people rely on. My hands started to shake uncontrollably, my heart raced and jumped in my ribcage, everything seemed clearer and sharper.
As arranged, the phone rang at 9.40 and within seconds I was live on BBC Radio London. Although the time passed in a blur, it was a decent slot, a good chance to actually go through some of the issues and inaccuracies in the newspaper articles.
The headline in fact screamed "SCANDAL OF 80,000 ON SICKNESS BENEFITS FOR MINOR AILMENTS....INCLUDING DIARRHOEA", a gift to an "expert" like me with bowel disease. I started by pointing out that my "diarrhoea" might be due to the 32 growths I've had removed from my guts, the 7 major operations that have saved my life and the loss of half my bowel. If we cherry pick conditions or symptoms to prove that all claimants are scroungers, we ought to be very clear what they relate to.
I made several other points about these "fake ailments" - "blisters" that may well be due to conditions like Epidermylosis Bullosa where a sufferers skin blisters and tears from the lightest touch, that "asthma" affected 5.4 million people in the UK, yet only 30,600 claim support from the state to cope with it. My nephew died of asthma early this year. He was 11 years old.
I made the point that surely we should actually be discussing the fact that the assessments used to determine whether someone is "fit for work" have been found unfit for purpose by the professor who designed ESA, the government's own advisory board, the CAB, Compass and the Harrington Report? Surely we should be discussing why 40% of decisions made by ATOS go to appeal with up to 80% overturned as inaccurate? Surely we should be more worried that 100s of people are being found "fit for work" every week who have severe, long-term, degenerative conditions that will never improve? That tribunals and assessments are causing great distress to people who are "truly vulnerable" - the very people the government claim they will protect?
Finally, we talked about The Broken of Britain and my very own little blog and how we work very hard to offer facts and alternatives to the government which are roundly ignored. That we can work for weeks, producing reasonable, constructive evidence, that can all be undone in one morning when the Mail, Express and Mr Grayling get together to offer yet another three-pronged assault on the sick and disabled.
I asked how it helps the debate one jot to keep focussing on cheats and skivers? When someone with a complex, variable condition presents themselves for "assessment" how does it help the assessor to make a reasoned decision when they are told anyone with "blisters" or "headaches" or "asthma" is just faking?
I'm very glad, that at the very least, we are finally getting a "right to reply". It means very much to me to be able to speak on the same forum as ministers such as Mr Grayling and to do what I can to reverse some of the hate and ignorance they seem determined to stir up.
The fact we are now governed by ministers prepared to stoop to these levels shames me. I hope it shames you too.
UPDATE : The brilliant Broken of Britain, posted the link to my interview http://www.bbc.co.uk/iplayer/console/p00g1xk9
My bit starts at 37 mins